Kirk's Blog

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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

The Joys and Challenges of Parkinson's Advocacy

 

There are good days and bad days when you are a PD Advocate, like anything else.

Linda and I got in the car at 8 am to drive up to Greeley to fulfill a commitment to speak at the PD support group there.  After stop and go traffic on I-25 through the Tech Center and construction slowdowns/bumpy roads, we arrived in Greeley with time to spare (or so we thought).  I was riding shotgun (as always) and was in charge of navigating us to our destination with the help (?) of mapquest.  This created two problems; mapquest directions often are convoluted and I get confused/flustered very easily.  Within minutes, we were pretty much totally lost.  Then we thought we were back on track but the road ended at a reservoir and we were lost again.  Linda asked a nice lady who was walking her dog for help, and she was more than happy to give it.  Unfortunately, in spite of her enthusiasm for the challenge, she knew less than we did.  We pulled over and Linda quickly came up with a new game plan, a key part of which was to put me on the bench.

When we rounded a corner and heard beagles barking in the distance (this part may not be 100% factually correct), we knew we were on the right track.  We arrived at our destination ten minutes late.  Now all of this may sound like “no big deal” to most people, but I was a basket case.  Stress and PD don’t mix.

I went inside and asked a nice young lady if she could direct me to the PD support group meeting and was met with a blank stare and the sound of crickets.  Another lady joined her, but she didn’t know either.  Just as I was about to give up another lady came along who knew where I should go (I know what you are thinking and you should be ashamed!). 

We entered the room as people were talking about the possible role of the gut as a starting point for PD (we knew this wasn’t a group of rookies).  We were introduced and found a place to sit. 

At that point, I actually did something smart (or at least Linda told me it was later).  I admitted that I was stressed out from the trip and asked for a few moments to “collect myself”.  Since I was surrounded by PwPs and care partners, everyone understood totally.  The meeting went very well.  They were very interested in our palliative care research study at University of Colorado Hospital (we are members of the patient/caregiver advisory council).  We talked about many other subjects, notably the importance of working with a movement disorder neurologist (MDN).  Predictably, not everyone was doing that for a variety of reasons, the main one being that there are no full time MDNs in that area.  We were able to share with them the idea of working with a local neurologist and a Denver-area MDN as a team as well as the growing trend toward telemedicine.

As I was closing (there was applause which is always good), I mentioned that I had brought a few copies of my Window of Opportunity and Shaky Paws Grampa children’s books in case anyone was interested.  At that point, a caregiver stood up holding a copy of the “Window” book.  She told the group that the book had great value to everyone with PD and that it has been very helpful to her (plus more nice stuff I can’t remember).

Anyone who has put their heart and soul into writing a book that they hope will “make a difference” in the lives of people they care about so much (in this case, all my PD brothers and sisters) will tell you that a comment like this makes it all worthwhile.  As you can imagine, it was difficult to get the words out to thank her adequately.

We were impressed by the group's leader, Ann Rich, and asked her how she got involved.  She lost her father to Parkinson's a few years ago and feels committed to helping others with PD to honor his memory.  She also shared how she wished that palliative care had been available for him as there had been avoidable problems.  It was obvious that she had a real connection with her group.  At that point, everyone in the room expressed their gratitude for her caring and service.

In spite of the challenges we experienced on our journey, the joy we experienced in our interaction way more than made up for it.  It was a good day. 

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Kirk Hall

What is neuro-physiology?

Neuro-physiology combines the use of a neurofeedback device that records brain frequency with a mobile app that guides the user through an exercise program.

Neuro-physiology enhances exercise helping fend off Parkinson’s symptoms. Here's how:
Reducing brain frequency during exercise makes exercise more effective. Exercise prolongs the good effects of the dopamine that remains in your body (or is taken orally).


Using the FocusBand neurofeedback device, you train your brain to be in a better state during exercise. This makes the effect of the exercise on your body better, allowing the existing dopamine to be more effective. This has the effect of increasing a Parkinson's patient's "on time,"reducing or abating some of the symptoms of Parkinson's.
 
 The Just Do Something Every Day mobile app provides a custom exercise program that, when used in conjunction with FocusBand, guides the user through a carefully designed exercise program. Each exercise is chair, wall, or floor supported so balance issues are reduced. The program was designed by Tom House, PhD. Tom is a former major league pitcher and is currently one of the world's most renowned throwing coaches, working with Tom Brady, Drew Brees, Matt Ryan, and scores of major league baseball pitchers.


T Together, FocusBand and the mobile app will retrain your brain during a short daily exercise program to get the best possible benefit from the exercises. Just Do Something Every Day is setting up a "crowd trial" to collect more scientific data on neuro-physiology.

More information on the complete program and crowd trialing can be found at www.justdosomethingeveryday.com.

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